Soldiering On...

For a while, I've put off writing this post. I know there are friends and family out there who check regularly to see if anything is new or changed in my little corner of the world. And since this has been a blog devoted to my life with cancer, it seemed a shame to ruin my 3-month summer hiatus (and all of you who travel this road with me) with the dullness of days I've got going on right now. You'd think I'd enjoy it more, be more grateful, start each day with a smile, look for the silver lining in this down time. I AM grateful. Very grateful. The alternative is so much worse than my whining complaints. And I'm still hopeful. I have to be VERY hopeful. It's nearly one month until the next scans, and I pray every day that the doldrums I feel are not snaking their way into my cells and turning them into villainous tumors. I pray these feelings are just emotional and not physical. 'Cuz it's real...and it often crushes the good. Before I rant any further, I'm not looking for pity or donations. I don't need a casserole or a phone call or a drop-by visit. I DO need prayers. I DO need someone to read and then say, well, there is the reality of life. It's not all sunshine and rainbows. It's not all sugar cookies and ice cream. It's not all miracles and contentment. It's plain ol' life, and mine is no more perfect or saintly or courageous as yours. We're all soldiers together; it's just that sometimes the enemy is ourselves. I am on the ledge of depression. I've been over the ledge before, so I know it's not serious, as in need-to-take-meds serious. But I am teetering. It's been a hard half year for me. Some of you know details, some don't. I'd rather that you didn't. I've said and written this before, but I'll do it again: Heavenly Father knew I'd have to put all my energy into the way I've had to handle other challenges, so He took away the health battles for now (and hopefully, forever, right?). There are people I love with all my heart who have suffered and who are now suffering; they have needed me, some from afar, and not always in a physical way, but just in a pocket of my heart and soul. There are people I barely know with cancer who are dying a slow, painful death or who have been told they may have to have the Whipple surgery. There are children who have had more surgeries than fingers on their hands, or who have been burned beyond recognition, or who have been killed randomly and thoughtlessly. There are those I love dearly who have required intervention from some downhill spiral to save their lives. There are times when Friday's paycheck is gone, with mere pennies left over, by Friday night. There have been lost jobs and lost income. There have been promises of great summer adventures, only to be dashed by another bill or necessity, so that the only adventure for this week is a trip to the library and a few free books. My girl looks at me with hope in her eyes every morning...and I can only answer with a weak smile and an even weaker hope that maybe tomorrow--MAYBE--we can take a stroll through the grocery store and buy a pint of ice cream. Bless her heart, she accepts it without murmuring. She knows, though I wish she didn't. These days, I'm scrolling faster through Facebook without stopping or reading or watching or listening. Don't get me wrong--I love, LOVE, to see posts about awesome trips to the zoo and the beach and vacations and concerts and reunions and parks and parades. But, selfish me, it makes me sad. I want that, too, not for me but for her. One random day (they've all melted together in the heat), my girl announced she wanted to dye her hair. Purple...or maybe blue. I used to be the bystander who hurtfully judged these adolescent girls (and boys) with their crazy heads of colored hair and thought, what kind of mother would let her child do that? Now I know. She's probably a mother a lot like me, who has seen her beautiful daughter doubt her self worth and question whether her introverted personality makes her totally invisible to the rest of the world. She's probably a mother who would do anything to protect her beloved child from those who incorrectly assume because she is quiet and observant and hard to get to know, she is also a snob who thinks she's better than everyone else. So NOT true. She just wants someone to see her, to understand her, to talk to her and make her laugh, to like her because she's funny and smart and a great listener and a loyal friend (to those who break through her shell) and would someday like to be an anthropologist or a Secret Service agent or an author or a film maker and live in Alaska in a cabin with a huge St. Bernard and a few cats. So, I let her dye her hair, first purple, then blue. And I walk beside her in public and watch for people's reactions. Adults are the worst, especially older ladies with their (own) purple-tinted hair. Children are the best. Little girls see her and turn to their mothers and ask, Mom, can I dye my hair? Or who whisper, Mom, look at her pretty hair! Little boys stare. We laugh about it. And when someone (like the checker at the grocery store or the motorcyle guy in the parking lot or the mom at the park) goes out of their way to tell her they love her hair, I see how she glows from the inside out. She is not invisible. She is beautiful and always will be. And if blue hair makes her happy, it's okay, because someday she'll be happy with less drastic measures. Someone will see her heart and her mind and her beautiful soul, and she'll be happy. July is a hard month. It has been for 11 years now. We celebrate sweet birthdays, but we also relive deaths and regrets and grief. It's a time to be with family, but there are holes in our hearts where those we miss used to be. I have a hard time sleeping. I stay up late and read and write or watch PBS on TV, and just as I think I'm as exhausted as I need to be to sleep, I am back up again with an uncomfortable restlessness. It's not a pain or an ache, but something that makes my brain tell my body to move--stretch, twitch, rock, anything but fall asleep. Hours pass. My sighs wake up my hubby, so I leave our room. It's frustration at its finest. Some nights I even think about making an escape, anything to get away from the weird sensation of being "antsy." It's another reason (or symptom) of the depression, I know. It saps me of any other thoughts or feelings. It's torture. And so, I soldier on. One step at a time, one sleepless night at a time, one adventure to Wal-Mart for a loaf of bread at a time. I'm sure there will soon come a day when I'll reread this and think, good grief, it couldn't have been that bad. Especially when others are living through so much worse. It will pass. Hopefully sooner than later...

Springing Forward

After my three month "vacation" from Huntsman Cancer Institute, it was time for the scheduled scans:  CT of neck, chest, and abdomen, and brain MRI.  It was pretty much business as usual, except that the University Health Care network just happened to be launching a new computer system this week. What should have been a simple (brief) CT scan and the usual 45-minute brain scan turned into a four-hour marathon that was 98% computer-related. Good grief! My sympathy was absolutely with the clinic receptionists, the nurses, the lab technicians--every step of every procedure had to be entered into the new system, which of course was confusing, slow, and unfamiliar. The only bright side was that every person who crossed my path was apologetic, kind, and ready to do anything to make my wait less stressful. It will be a good system when it's up & going...if we can all endure the mess it is now.  I was worn out from running from one end of Huntsman to the other (the lab where I get my blood work done & my port accessed/de-accessed is down a long hall on the 2nd floor on the west side and Radiology is on the 3rd floor of the east side down another hall!) and from the anxiety & worry.  I came home and slept, which is how I deal with a lot of things lately.

The next morning, Linds and darling baby, Will, came with me to get the test results from Dr. Grossmann.  Again, the new computer system reared its ugly head for a moment: my appointment had  accidentally been deleted and rescheduled for next week, yet no one had called to tell me! I thought the worst, sure that the scans were so bad that the doctor needed more time to study the results and options and break the bad news. Linds and I are well-known among Dr. G's receptionists, and poor Patti (who had canceled and rescheduled the appointments) couldn't say "I'm so sorry!" enough. When we said we didn't want to come back next week, she pulled some strings. "I've got good news & bad news," she said. "The good news is I found a spot for you today.  The bad news is that it's not for two more hours. Can you wait? I'll give you some cafeteria cards for a free lunch!" Of course we agreed.

Sweet baby Will made the waiting time bearable.  Everyone wanted to goo & smile at him and tickle his little tummy. He was so sweet. Such a good baby! All my vitals were good; I've even gained four pounds! Yikes! The new appointment time worked out to be better than the original one--not so many other patients around, which gave Carolyn and Dr. G more time with us. A tender mercy. Carolyn came into the exam room, beaming and cheery. "Your scans look great!" That was all I needed to hear to relax. She and I looked at the scans together and she showed me my drastically-shrinking tumors in my back and groin (I personally can't even feel them any more!) and how the little "spots" we've been watching for a while have disappeared! God is good, isn't he? My blood tests were better, which is probably from my better digestion & weight gain. Dr. G was a little concerned about possible anemia and the need for me to have another blood transfusion, but the low score was most likely a glitch in the computer system because I haven't heard anything further from him about it. I asked about a recommendation for a new ENT (Ear/Nose/Throat) doctor (wonderful Dr. Bradley isn't on my insurance plan any more...sniff, sniff) and I've already got a consult appointment with a Dr. Buckman next week. Dr. G said he's a surgeon, and since what I really need is to get my right ear cleaned out again (since the radical neck dissection, there is no moisture whatsoever in that ear), Dr. Buckman might be "over-kill". "Gunk" accumulates & clogs up my ear, and I can't hear! We'll see what they say next week. The neck scan actually shows a blockage somewhere by my ear...could explain a lot...maybe.

Dr. Grossmann was pleased to see that my "white patches" (I know there's a scientific name for it, but do you think I can remember it?) are still signaling the "death" of cancer cells in my back AND in my neck/face. I don't notice the facial patches, but he commented on it the minute he saw me. I told him that in the past three months, I've also developed a nice white "stripe" in my hair at the back that won't hold hair dye--my new zebra stripe! I guess to me those things seemed to be more age-related. Who knew?

After all was looked at and discussed, Dr. Grossmann said that I can go another three months before the next scans. He said that his main concern at this time is that my brain scans stay clear and that I'll need to stay on the 3-month schedule for a few years, since any melanoma brain mets that grow can be treated through surgery & radiation when they're found early. Though this is a scary thought, I also feel a lot of hope & comfort when he talks in terms of years. When I first started this journey three years ago, there was a "doomsday" feeling when we discussed the length & quality of life, living with melanoma. Dr. G is amazed at the wonderful new drugs and studies and trials to combat this cancer, and even said that melanoma's development of successful treatments is the fastest growing science among all the cancers. I'm seeing it in my own life with the success of the IPI drug; now, PD1 has been approved, and Dr. G says its success is even more astounding than IPI. God is really good, isn't he?

I'm looking forward to a summer without doctor appointments. I still have good & bad days, mostly with my gut, which is my "normal". One day recently, I could barely drive to pick up J at school because of the pain. Sometimes my well-laid plans to run errands or do something fun with family have to be put aside to climb into bed for a few hours while the pain subsides. It's a "normal" that I'd rather not have to deal with, but there are worse things out there...and I feel extremely blessed. And getting good news just automatically makes me feel loads better!  (So do these adorable people in their Easter best! And, yes, I'm so sad not to have an Easter pic of my sweet J...)

Lessons from the Road

I have a new job. Well, it's an old job with a new "client". I'm already the main taxi driver to and from the high school twice a day; now, I transport the hubby to and from work, too. With over 300,000 miles, his old truck finally fell apart piece by piece until it couldn't pass inspection & emissions at the end of April without a boatload of money. Its fate is unknown. For now, it's parked in the driveway until we either win the lottery or sell it to the junkman for parts. We just spent over a hundred dollars on my car for a new battery and headlight bulb - praying now that it sees us through all these extra miles on the road. On a typical weekday, I give my girl her first "wake-up call" at early AM and the hubs and I head off to RMF, me in my jammies. I get back home 15 minutes later and give the second warning to Miss J so we can be back on the road to school. Afternoon brings the process back again full circle. I should count my blessings that the commute times are staggered enough to make it work...so far.

Today, driving back from the school, I started thinking about different lessons I've learned on the road from the time I was a little girl to now. I learned kindness & compassion from my father, who seldom passed a car in trouble without pulling over to help, often in the worst kinds of weather. The rest of us would huddle in our station wagon, worrying for Dad's safety, but proud that he was such a help to those in need. I learned how frightening an accident can be, even one that's basically a "fender-bender", when my mom was hit broad-side by a car running a stop sign. We were on our way home from Burger King with dinner, and I never eat a Whopper without remembering that day long ago. I learned that there are some things you wish you had never seen from the driver's seat, like a motorcyclist (not wearing a helmet) losing control of his bike at 50mph or the mother who threw her babies & then herself from the upper floor of a downtown hotel. These images seem to be permanently imprinted on my brain, and I am always sad & full of sympathy for these unfortunate victims and their families. I learned that road trips, whether for a few hours or several days, are always better once you're in the car - I'm a stressed, grumpy, frazzled pre- and post-vacation person. Just get me in the car & I could care less if something was left behind or undone! I immediately start to relax and look for landmarks that bring me closer to my destination. I learned that cars run better when they're clean (thanks, Dad) and that regular oil changes bring peace of mind (thanks, hubby).

One cherished lesson came about 18 years ago. Once again it involved my taxi driver status. I was dropping my 9th grade daughter off at school after a particularly trying morning. There had been tears and grumbling, and it was a miracle she was now curbside, ready to go to class. I watched her gather her backpack and open the car door. I probably sighed a little too loudly as she headed for the junior high. I was newly-pregnant after almost 15 years and my emotions were shaky. As I watched my beautiful, strong-willed, stubborn but insecure daughter walk away, the thought came to my mind, "And you really want another one?" Just as quickly, a voice inside said, "Yes, because I love that one so very much." I cried all the way home.

The past three years have brought other lessons from the road - climbing the hill to the hospital or going from clinic to doctor's office, sometimes for simple (is there such a thing with cancer?) appointments or more complicated treatments or even that haunting trip to the ER when I was in such horrible pain & ended up in the ICU. When I'm with others, these trips can include laughter, tears, hope, faith in the doctors, trust in God, dialogue that helps unravel "medical-speak" & bring understanding. When I'm alone, it's a time to pray, listen to soothing music, remain optimistic & rehash options, or just simply drive in silence. Each time is a lesson, each time is an opportunity to count my blessings. And each time I get behind the wheel to take someone I love to work or school, it's another chance to be together, even if no words are spoken until, "Goodbye, have a nice day, I love you." More lessons to be learned...

On Hiatus

For any who have wondered how my 3-month hiatus is going (until next scans in May), I am doing well. I have my ups & downs, of course. I'm eating better - and gaining weight, which is not really a good thing, since I tend to eat the worst things. I've got a goal to give up sugary treats - candy, cookies, cake - as soon as I eat the mandatory Reese's peanut butter Easter eggs and a few pink Peeps! I can tell that it affects me in ways that I don't need or want & I know, deep down, that cancer loves white refined sugar. So why would I purposely put that junk in my body? Am I crazy? Addicted is more like it. That ends next week. It will be hard, but I've done hard things & I know I can do it again. I want to feel better, body & mind, and I want to feel motivated to exercise to make what muscles I do have stronger. I want to stop cancer without resorting to surgery or radiation or chemo. It seems so simple, to starve those nasty cancer cells and make them disappear on their own. 

I also believe that God gave me these three months to worry about something other than myself. Dean had a terrible case of bronchitis that went on & on until he finally got on meds, Janessa has gone through some health issues that needed my attention, and other family members have needed time, love, and support that I've thankfully felt well enough to give. Amazing how that works, isn't it? And it's great to know that He is so aware of each of us individually that His blessings are exactly what is needed at exactly the right time. He is my source of strength, always.

One of the blessings I recently received was being able to go to the temple with my sweet niece, Audrey. She's preparing to begin a full-time mission in Mexico in a couple of months. She is currently a student at BYU & chose to go to our beautiful Bountiful temple. It was a special, sacred experience & I was grateful to share it with her, my mom, two of my sisters, & my Aaron and Lindsey. Again, it was a blessing in this time of waiting & being well enough to participate in such life-changing events.

It will soon be Easter. It will be a low-key celebration this year at our house, but we will certainly be counting our numberless blessings. Because Christ loves me, I try harder to be better every day. There will be more updates as time goes by, but for now, I'm enjoying the service I can give to others. It may be small, but my heart is full of gratitude to be at a point of giving instead of taking...

(Pictures: the beautiful Bountiful Temple and an Easter picture taken in about 1967)

Another Year

Last week, March 7, marked the 3-yr anniversary of my melanoma diagnosis. The past three years have been a roller-coaster ride: surgeries, radiation, chemo, pain, sleepless nights, tumors in weird places, bills in the multi-thousands of dollars, countless doctor visits, driving up & down the hill to Huntsman or the U of U, prayers, scans & MRIs, miracles, hope, good news, new baby grandsons (3 of them!), Mom-scares & hospitalizations & recoveries, my girl dating & driving, a little black puppy who loves to snuggle and sleep under my blankets, and many, MANY other hiccups and blessings. To say I am grateful would be like saying I'm human... Well, duh! I am beyond grateful. I am here, I am alive, I am functioning, I am a result of many miraculous mercies that seemed unreachable - but "nothing is impossible with God." I pray to be here in three - or twelve or thirty - years, counting blessings and enjoying every second with my sweet family.

Last week, I saw Dr. Adler to follow-up on my pancreatic enzyme meds. Yes, I'm doing much better, but not as perfectly as I had hoped. Still have stomach aches, which I hate. They sap my strength. He gave me a few tips - cut out obvious white sugar sources, like cookies, candy, & cakes, and watch out for onions & peppers etc. There goes most of my diet! He also admitted that another side effect of the Whipple surgery (haven't I had to endure them all?) is that because part of my pancreas has been removed, the remaining part will eventually atrophy. Great. How long is "eventually"? He also said that, unfortunately, in "ten or fifteen years", I might develop diabetes, which the pancreas also helps to control. I should have shuddered at the thought of diabetes, but my ears and my heart were somersaulting at the hope of 10-15 years down the road! To see my girl married with babies, to see my grandchildren growing up & going on missions & graduating from college & marrying in the temple...these are dreams I cherish and want to experience. To be alive, even with diabetes, would be an awesome answer to prayers. 

All in all, I am grateful for what I've learned over the past 3 years. I wish I didn't know what I know, but if I had to have this trial in my life, I'm thankful for knowledgable doctors and ongoing studies & trials & treatments that have brought me this far. This is a time of ground-breaking hope and scientific revelation which are blessing thousands of people everywhere. I am just one of many, but so happy to be one.

Lovely A-Plus

I had my regular 3-month check up scans and brain MRI done late in the afternoon on Tuesday. Even though the procedures were quick, my stomach was in turmoil after drinking the contrast. Ugh. I was even in a little bit of pain lying there on those tables, so I was ultra-happy when things were finished. For the first time, I had to re-do one of the MRI scans because the tech could see "movement". Weird, especially since I know I've drifted off before & have jerked myself awake again without having a noticeable "movement".

Wednesday morning, Linds & baby Will came with me to see Dr. Grossmann for the results. Will was an angel-baby and stole the show. Everyone loved him. He is so precious. Dr. G came in grinning and in a GREAT mood, which is always a good sign. The first thing he said to me was that my scans were "lovely" and everything looked wonderful. Really? Truly? I actually clapped for joy. I love how he goes through each image, explaining what has been there for a while & remains the same or what has shrunk because of treatment (groin & back tumors) or what has disappeared entirely (liver). He expressed the wish that he could assign one radiology technician to read the same patient's scans so the new ones wouldn't "freak out" if they saw something unfamiliar. I'd have to agree. Sometimes I've read their reports and wondered why there was such a "doomsday" feeling compared to Dr. G's optimism. He told us that there are some people who, years later, are still receiving the benefits of IPI. How cool is that? I'm going to be here a long, long time! He also said the MRI was "A-Plus" and that this was a "best news day". So awesome. Thank you, God.

After looking at the scans, Dr. G said he wanted to see & measure the back and groin tumors. I showed him the back one first, and suddenly, he became very excited. He told Linds to come over and look at what he was seeing. He also told me to look in the mirror when I got home and see what he was so pleased about. Where the radiation had burned my skin, there were now little "white spots" that were de-pigmentization from the treatment. (I know I'm not going to get across the scientific terms & meanings - even I don't fully understand it - but hopefully this will tell the gist of it. I really need to look up this process and research it.) The spots were evidence that treatment effects were continuing and that my good, cancer-fighting cells were "fighting" the dead, burned cells, recognizing that they were not normal. He was ecstatic that I'm still responding. He also said that this could happen in my hair or on my scalp and that some people call them "leopard spots". So interesting. I'm grateful for his explanation and his enthusiasm that it's a good thing because I think if I had discovered it first, I would have freaked. What in the world is THAT? 

The only bad news of the day was that my blood counts are still terribly low. Dr. G said that my body has become so used to these low levels, it compensates & gives me enough energy to handle my every day life. He looked at Linds and said, "If you or I had these low numbers and tried to walk 10 steps, we'd be 'whupped'." He finally ordered that I get 2 units of blood, and Linds & I couldn't have been happier. We've been waiting for this and hope/pray that it makes a difference & tells my blood marrow to ramp up production of my own good blood cells. I'm also praying that it gives me energy and maybe some "roses" in my cheeks. We'll see...

So, I went home yesterday with my port accessed (that was kind of strange, too) and came in early this morning to get my two units of blood. Linds texted me and asked, "Do you feel like a vampire yet?" YES!

I love Dr. G's optimism and hope. There is no beating around the bush - he tells it like it is and treats me like a long-term survivor. Yesterday, he asked how my singing was going and I had to tell him that I had had to give it up. It made him sad to hear that, and he said he would try everything he could to get me back to my "cool hobby." I love that he thinks of that when he sees me and he remembers it. I'm very grateful for his compassion and expertise. I always leave his office feeling more powerful and armed with knowledge. 

My sweet oldest grandson celebrated his birthday last week. He's growing up. It's wonderful to see.

  

Love Pics

(Daddy Aaron holding the hand of his perfect little son...a treasured moment...)

 I know I haven't blogged lately; maybe because there is more to "show" than there is to "tell". News on the medical side is pretty boring right now--for a few more days anyway--which is just how we like it. Scans are happening in four more days & it's hard to believe 3 months have gone by since the last ones. But that's not to say that life hasn't been a-movin' and a-shakin'! Just enough to keep me busy and on my toes, which is a great boost to the energy level, as well as the quality of sleep when I do finally crash. The Creon meds (my pancreatic enzymes) are working tons better since I was taught how to take them properly, so that has been a blessing. Food isn't very fun when it becomes a constant worry...

Now for the "showing": This has been a dreary, cold winter for me. The house is never warm enough & is only tolerable when I wear a sweater or jacket inside (I feel like Mr. Rogers--now I understand changing into a zip-up sweater right after walking through the door! I do it, too!) So, the following "love pics" have warmed my heart and kept me from tipping over the edge of sadness due to lack of sunshine & fresh air. It's been tough! 

January is brighter because of my tall, thin, teenaged girl who celebrated her 17th birthday without too much hoopla (our car was in the shop all day, so we had to be content to watch movies under our fleece blankets). She makes me smile daily, cry once in a while, and laugh when I really need it. What a gift she is! The picture of her as a sweet chubby baby with my darling dad was a warm way to celebrate his 75th birthday at the end of January. We miss him hourly...  And our chub-a-bubba, Jax, is now 7-months old, as of January 28. Papa Roy must giggle every time he sees these precious babies!

February has already enlarged my heart & filled it with love for my wonderful family. On February 5, our little Jane celebrated her 4th birthday with balloons and berry-filled cake and lots of girly-gifts...AWESOME! But the best gift of all (though she may argue that fact as she gets older!) was the birth of her brand-new baby brother later that afternoon! Will Calvin was born about 5:30 PM on February 5. He weighed 7 lbs 8 oz, was almost 20 in long, and has the cutest, roundest face & little boy "haircut"! We are all completely in love with him. In the words of his proud daddy, he is "perfect"! We've kissed his velvety-cheeks, snuggled his tiny body, and watched, mesmerized by his every breath & movement. He has captured our hearts.

Finally, no pics, but February 9 marked our 35th anniversary. 35 years? How can that be? Some days, it feels like forever--other days, it was a blink of an hour. Crazy life.

Enjoy the "showings". I feel warmer already.